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Help Roberto get back on his feet!

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About a month and a half ago, my little brother Roberto woke up with pain in his legs and was unable to walk. Roberto has a rare genetic condition called Hereditary Sensory Autonomic Neuropathy Type IV.  This condition prevents Roberto from feeling pain and sweating, tearing, and regulating his body temperature.  If he feels pain they say it is 100 times that of what we would feel.  He was seen in 2 Emergency Rooms on 8/5/18 and had x-rays, a CT scan and MRI's done.  The diagnosis was Cauda Equina Syndrome - an emergent condition where his spinal cord was compressed causing him pain and the inability to walk.  The neurosurgeon at Goodman Campbell believed that he had an infection and chose to treat with antibiotics - not treating the acute problem.  He was discharged from St. Vincent's Peyton Manning Children's hospital on antibiotics, still unable to walk or urinate on his own.  Things just weren't right and Roberto's mom was in communications with Dr. David Feldman at the Paley Institute that insisted Roberto needed a Spinal Orthopedic surgeon.   Dr. Kosmos Kayes assisted with finding a specialist and Roberto was seen by Dr. Poulter at OrthoIndy on 8/13/18 who confirmed the Cauda Equina Syndrome that had been going now for 8 days.  The longer this condition goes without being treated, the less likely it is for him to regain full function (typically it is treated within 8-24 hours). Dr. Poulter consulted with Dr. Feldman and in the early evening of 8/13 Roberto went to surgery with Dr. Poulter for a laminectomy, decompression and spinal fusion at L2-L3.  Roberto was recovering and even attended one day of school. The night of the day he went to school, he woke up screaming with leg pain which confirmed that more must be going on.  Roberto had another MRI which confirmed that his spinal cord was also very tight at the L3-L4 level and L4-L5 level.  Mom knew we had to get him to Dr. Feldman at the Paley Orthopedic and Spine Institute in Florida to get him treated.  As Dr. Feldman had suspected, Roberto never had an infection in his spine and that he actually has a condition called Charcot Spine which can go hand in hand with Robertos's condition.  Roberto is scheduled to have decompression and fusion of L3-L4 and L4-L5 done by Dr. Feldman on October 3.  He will need to stay locally in West Palm Beach for 2 weeks after surgery.  My mom is currently on Family Medical Leave from her job to take care of Roberto during this medical crisis, and these donations will help relieve her of some financial stress.  Donations will also be used for Roberto's medical treatments and living expenses throughout his recovery, and future travel expenses for follow up appointments. With your help we can help get Roberto back on his feet again!
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Donations 

  • Ann Coller
    • $100 
    • 4 yrs
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Organizer and beneficiary

Luis Salazar
Organizer
Lafayette, IN
Susan Stingley-Salazar
Beneficiary

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